Josephine continues to improve her speech skills, so much so, that I can’t contain myself (or my high-pitched voice) in this video from decorating Easter eggs…
Happy Easter Indeed!
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Tag Archives: tetrasomy 8p
THE HAIRCUT!
Yes, the word any parent, whose child suffers from Trichotillomania, loves to hear…HAIRCUT. Not because Josephine’s hair needs to be trimmed up after pulling episode. Because Josephine hasn’t pulled any hair OUT in some time. Granted, we are keeping her hair short, so she can’t pull any out (she is still grabbing her hair when frustrated, but can’t get ahold of any). However, the idea that I CHOSE to take her to get a haircut makes all the difference in my heart.
Happy Days
This melts my heart every time I hear it…and then she mauls me!
A Breathe of Fresh Air
After being redirected by an amazing security guard through the bowels of Morristown Memorial Hospital in Morristown, NJ, we arrived at the office of Dr. Arthur Atlas, Pediatric Pulmonologist.
HI!
Good news is Josephine’s lungs are working well and present no issues at this time.
Mediocre news is Josephine’s left side of her rib cage is indeed bell-shaped, meaning the upper part of her rib cage is more narrow than the bottom (uh, kinda similar to a BELL). At this point, it’s more of a cosmetic issue than anything else. My thought is when she wants to correct the issue, we can DISCUSS it with her. But if it presents no danger to her, why change it?
Dr. Atlas (also an wonderfully gentle man) wants to see Josephine in a year to make sure everything in growing in proportion to each other.
This visit made me think it’s about time to see Dr. Dreamy, er, um, Dr. Donald Putman (Pediatric Cardiologist) again. The last time he saw Josephine was when she had just turned 1 year and he cleared her of any heart issues. But as I understand with chromosome disorders, things can change year to year and it’s important to stay on top things.
I tell ya…it never gets old seeing Dr. Putman!
No Bones About It
I would like to take this time to introduce to you, our newest doctor to enter Josephine’s world…(trumpets please): Dr. Mark Rieger, Pediatric Orthopedist, at The Orthopedic Center in Cedar Knolls, NJ.
I have read that scoliosis is a common characteristic of Tet 8p – about 1/2 of the kids, or 7 if you want numbers. And I’ve noticed since Josephine has been on her feet and moving more, she always leans one direction (don’t ask me which way since I can’t even tell MY OWN left and right at this point).
Besides, I was getting tired of the same old set of doctors and wanted to meet someone new…
Seriously, though…Dr. Rieger was very kind and had a great bedside manner with Josephine.
No scoliosis at this point. Straight spine. I am certainly relieved to hear that. But I also know that as she starts to walk more, her spine may change as well. I tell ya, this gal’s keepin’ me on my toes!
He prescribed braces for Josephine – called Bilateral Low Profile SMOs – to help her strengthen her standing and walking. Josephine had her fitting last week and we should be getting them in the next couple of weeks.
Dr. Rieger also noted a rib cage abnormality, which we knew about. What we didn’t know was if it was an extra rib, bowing rib, missing rib, etc…
It was suggested that Josephine has a bell-shaped unilateral rib cage (good luck finding ANY information on THAT one…scoured the Internet for something to see, but came up short) and should see a Pediatric Pulmonologist to determine if her lungs are affected by the deformity.
Hi Ho, Hi Ho, it’s off to Morristown Medical Center we go (well, went, since I am so far behind)…
PT and MEDEK: A Video Retrospective
Due to my selfishness for peace, quiet and love of movies, I confess to neglecting Josephine’s site…Sentencing is immediate and will be served concurrently…ordered to post all MEDEK videos from January, February and March in current post (of which you are reading NOW)…
ENJOY!!!!
MEDEK Session 6
6 STEPS
11 STEPS
15 STEPS
MEDEK Session 7
MEDEK Session 8
School Days, School Daze
OUT OF DISTRICT!
These 3 words are music to my ears…and ones I wasn’t certain I would ever hear. I have heard that West Orange has a great child study team that looks out for the best interest of their children, but didn’t believe it until we saw it.
Josephine’s preliminary transitional meeting was scheduled for January 28. In attendance were our EI Service Coordinator, a West Orange Preschool Case Manager/Social Worker, our EI PT (Lana), our EI ST (Carrie), Sheldon Daddy, myself and Josephine.
Given the rarity of Josephine’s diagnosis, I was prepared to bring a 48 page Power Point presentation, complete with over 50 pages of articles about the 13 other cases documented. After a firm reprimand from our Stepping Stones family (Josephine’s group therapy school), I decided to forgo all those pages. Instead, I created a one page document, listing Josephine’s 4 diagnoses and 21 symptoms related to the Tet 8p. (click on this link to access the specific document – Symptoms)
That document was ALL that was needed for the case manager to determine the West Orange program was not suitable for Josephine’s needs. No explanation was necessary. No fighting was needed. Of course, it didn’t hurt to have her therapists there also – in fact, it further solidified the decision.
What was originally supposed to be a preliminary meeting quickly turned into the second meeting to arrange for the evaluation to formulate Josephine’s IEP (Individual Educational Plan) for the Fall 2011 school year. The child study team evaluation is scheduled for March 15, 2011.
We were also told to check out several private schools and were given a list of those schools, which matched the list I already had in my head.
The schools for consideration are:
1. The Children’s Therapy Center in Fair Lawn (already toured on Feb. 4)
2. The Horizons School in Livingston (tour scheduled for Feb. 15)
3. The ARC Kohler School in Mountainside (tour scheduled for Feb. 16)
4. P.G. Chambers School in Cedar Knolls (tour scheduled for Feb. 17)
Once I have toured all the schools, I will let you know my assessment of each, along with our 1st and 2nd choices (hopefully). I have my favorites from what I’ve read and heard about, but I am really trying to keep an open mind until after I see all of them and can compare adequately.
The good thing is we have this option, which gets Josephine one step closer to getting what she deserves: a life that’s “Normal for Josephine”.
Josephine the Boxer
Maybe this isn’t the BEST parental decision I’ve made, but it’s too cute not to post…
I was watching The Fighter and hangin’ with J-Bean. Well, I had no idea our little girl is destined to be the next Million Dollar Baby!
Weight Check at 29 Months
Happy to report A WEIGHT GAIN since our last weight check in December!!!!
After a visit with the pediatrician, nutritionist and GI, Josephine had a weight gain of 12 OUNCES, bringing her weight up to 19 lbs., 6 oz.
Of course, my worrying back in December was for nothing, but you just can’t take ANYTHING for granted when determining things for Josephine. Every ounce counts. Every inch counts. Every bite she takes counts.
But to know Josephine is gaining weight brings such a joy to my heart and relief to my mind.
She Goes A Walkin’ After Midnight…
I truly did not think this day would happen, from the first time I heard the words “tetrasomy 8p mosaicism”. I thought, “What is going to happen to my little girl, my perfect little girl? Will she ever be able to walk or feed herself or talk or get married?”.
Well, I sit here today, proud to type that my little girl IS going to walk, she DOES feed herself and she IS going to talk.
Now, let’s back up…let’s talk about the walking part…as a matter of fact, let’s not talk…WATCH!
FIRST INDEPENDENT STEPS (3 to be exact – it happens around :29)!!!!!